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Monday, November 18, 2013

I’ve heard it said that it takes a village to raise a child.
In our case, it takes a village to raise a family. And this family has one hell
of a village behind us. Last weekend was Quinn’s first Buddy Walk, an awareness
and fundraising event held in Houston each November. I spent much of this fall
organizing Quinn’s team and sending out slightly obnoxious Facebook posts in an
attempt to raise money on his behalf. The result was successful. We raised over
$7600 in Quinn’s name and were the 6th highest fundraising team in
the city, which is no small feat! We couldn’t have done this without the help
of our generous friends and family, with a special thanks to our incredible
parents, Larry and Patti Mennes, who personally matched every donation from Larry’s
employees. We wouldn’t have raised nearly as much as we did without their help.

When it came time for the walk itself, we had over 60 people
on our team in support of Quinn. His teachers at the daycare made posters and
came out in droves for our little man, and many of my own coworkers walked with
us to show their support. Even my dear friend Laura, who was terribly sick at
the time, braved her own illness to meander through the crowds out of love for
Quinn. The Stratford National Honor Society students walked with us for their
service hours and, even though I don’t know any of these seniors, they all
introduced themselves to me and made a point of meeting Quinn (and fawning over
his cuteness). Nearing the end of the one-mile walk through downtown Houston, I
came upon Stratford’s Junior Girls, many of whom were my students last year.
They watched last fall as I coped with the news of Quinn’s diagnosis and
celebrated with me when he was born during finals week. They were all there
with signs and banners, cheering Quinn’s name just before the finish line. At
this point I didn’t even try to hide my tears.

To say that this event was moving would be a gross
understatement. I am beyond grateful for these people, this village that
supports my family. Their love and encouragement sustain me and create an
environment for Quinn that is inclusive and celebrates his unique qualities.
Because the more I learn about Down syndrome, the more I see it as a gift. For
the people in my life to recognize this too means that our family is erasing
stereotypes and breaking down the barriers that he would have faced even a
decade ago. But most importantly, it means that we are loved, and love is all
we need.

Monday, November 4, 2013

October has always been my favorite month of the year.
Temperatures are finally bearable in Texas, football season is in full swing,
and pumpkin-flavored everything is in high supply. But this October, much like
last year’s, kicked my ass. My kids were sick virtually the entire month, which
meant that Brian and I took turns waking up in the middle of the night caring for
unhappy children and, in turn, passing illnesses back and forth between each
other. I’ve managed to deplete my already small stock of sick days and didn’t
sleep more than 4 hours at a time for weeks.

I’ve approached this time as a slump; I assumed that we’re
just going through a rough patch in terms of illnesses and doctor’s visits, but
the more I think about the past month, the more I realize just how routine
these circumstances have become. This is not a slump. This is our new reality.

Gamma and PopPop are life-savers.

An average week in our house consists of at least one
illness, a few meltdowns, physical therapy, and a visit to one specialist or
another. Add this to an already-busy schedule of two full-time jobs (plus
tutoring and responding to student and parent emails, which is a full-time job
in and of itself) and carting the kids to and from daycare and everywhere in
between. It goes without saying that I’m feeling a little spread thin. And
because of our full plates, we’ve been terrible friends to the very people that
can keep us sane. We’ve flaked and double-booked and avoided social outings
because, at the end of the long week, we desperately need to rest and recharge.
I’ve become the very mom I always loathed; the mom who uses her kids and their
germs as an excuse. It’s not that I’m trying to avoid the birthday parties or the
barbecues. Deep down I know they’d be good for all of us. But I sincerely don’t
want your child to come down with the funk that’s prevented us from operating
on even a marginal level of sanity all week. And, full disclosure, I’m tired. I’m
so bone-tired that I can barely move on Saturday, but I still have to do the
grocery shopping and laundry and house-cleaning that I couldn’t do during the
week because of all the aforementioned duties.

Where can I pick up my Mom of the Year award?

Of all the families I know who are raising a child with Down
syndrome, ours is the only one with two full-time working parents (to be fair, one of these families is currently looking for work. If you know of anything in the Houston area, please let me know). It never
really hit me until now, but I’m suddenly realizing that these parents aren’t staying
home out of choice, but rather out of necessity. There just aren’t enough hours
in the day to get it all done. Between therapy, specialist visits, surgeries
(we’ve got another this spring), and frequent illnesses, caring for Quinn alone
is a full-time job, never mind that we have another child that is demanding of
our attention. And so we’ve bounced around the idea of me staying home with the
boys a few times. It would mean saving the $1300/month we spend on daycare
costs (which is incredibly affordable for the quality of care they receive). Quinn
could attend The Rise School, a preschool for children with Down syndrome whose
hours and location are logistically impossible for us at the moment. We’ve
heard nothing but amazing things about this program, but it’s an hour commute
each day during the hours I’m at work. Leaving my job would make this a possibility
(even though the aforementioned $1300 would go towards Quinn’s tuition alone,
we would find a way to make it work). And it would mean that I could provide
Quinn with the attention and developmental strategies that are so important for
him right now and schedule doctor’s appointments before 4pm.

But in the end, there’s too much at stake to make it
possible. Money would be insanely tight. If I leave my job, there goes our
insurance and the boys’ transfer opportunity to some of the best public schools
in the state of Texas. But what it really comes down to is that I love my job.
I can’t, even for a moment, imagine myself out of the classroom.

We’re at an impasse. Our choices are limited, so we’re
forced to make the most of a difficult situation. And the end result of our
full plates is a loss of all the things that could keep us sane. This post isn’t
looking for your pity. It’s the last thing I need. But I guess I am looking for
your understanding. It’s why I missed that very important thing you planned. It’s
why I haven’t called. It’s why I’ve put on 10 pounds since June. Forgive me my
trespasses. It’s going to be touch-and-go for a while, but we’ll make it back
to the land of the living. And when we do, make sure that you have a drink in
hand for me. I’m going to need it.